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Topic: spinning wheels (Read 101985 times)

On Day #21, Jim must be feeling better because he's starting to complain. LOL The food is bad, the nurses are slow and loud, they won't let him sleep, and he's tired of being in a hospital bed. That's good to hear cause those are the the reasons for him to push it with the physical therapist so he can get the hell outta there.

They removed the foley cath today and had Jim up and sitting, and then up and walking the hallway. For the second day a row Jim ate a little something for all three meals of the day. WooHoo! Every step and every bite of food moves us closer to getting Jim back home.

I'm pleased as punch to tell you all that we've has three good days in a row now!

mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I never understood why they would wake you up ,it seemed like every 2 minutes to do whatever they had to do.

One time (the time with PCP), I checked myself out of the hospital AMA. I knew if I could just go home and eat MY chicken/rice soup and sleep in MY own bed, uninterrupted, that I would finally get well. Thankfully, that's just what happened! I can only imagine the sleep deprivation problem after 22 days in the hospital. LOL

You know, Jim's stay in the hospital has been making me totally re-evaluate how I think about my own health. I used to think my life had been miserable with those two hospitalizations, and for how sick I have felt through the last 15 yrs from the meds and this virus. Now I find myself in the unbelievable position of actually being the "well" partner (because lymphoma trumps puking over meds any day, in my book). Walking through the hospital halls, seeing those people in the beds, hearing their stories (25 days in; 45 days in; chemo, radiation and the resulting side effects) has really made me re-think just how "bad" things have been for me. That isn't to say that I still don't wish I had been lucky enough to have the "pill-a-day, chronic, manageable" version of this disease, rather than losing a partner before we could even get 10 yrs together, having this aids diagnosis and dealing with multiple harsh drug regimens; but I could have been soo much sicker. In that perspective, I have to stay that I've been pretty lucky so far to have only suffered as little as I have.

I'm hoping that, in the long run, my "new and improved" outlook about my situation transfers to Jim some, giving him the positive attitude he'll need to get through this crisis.

mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Today wasn't bad day; but it wasn't quite a good day either. Jim is having a new problem. He had been awake most of last night with pain in his lower chest (in the general area of one of those masses). They ran an ultrasound this morning and doped him up pretty good. Later in the day he was doing much better; but by bedtime he was hurting again. Hopefully this is a minor fluke and won't derail his release "by the end of the week" as the doctors were saying for the second day in a row.

On the emotional/mental side of things, Jim has been doing much better in the last few days. He's been alert and awake much more than his first two weeks in the hospital. Plus he's beginning to talk about what needs to be done. It's going to be very frustrating and very hard for him to learn to think in very short-term goals (what should he do? well today he needs to try to eat at every meal, do all the physical therapy they suggest and "try" to get some sleep to aide in the healing. what should he do next week? Well, we'll worry about what to do next week when next week gets here. The only worry we have for today is to tackle today's problems).

I thought we were going to have another problem; but that worked out nicely in the end. After my morning trip to the hospital, I checked the mailbox and got a letter about Jim's appt with welfare. Postmarked yesterday, the appt. was scheduled for TODAY at 230 - 30 minutes after the letter had finally gotten delivered. Some more of your thoughts and prayers of support for us much have come though, as his case worker turned out to be MY case worker too. I explained that he was still in the hospital and we made arrangements for the case worker to handle BOTH Jim's initial application and my yearly renewal at the same appointment. We've rescheduled for Apr 3 (the day after his SS phone interview), in the hopes that Jim will be out of the hospital by then. If he isn't, then we're both scheduled at my appt. time Apr 17th - and he better be out of the hospital by then!

mikie

« Last Edit: March 25, 2008, 11:17:31 PM by leatherman »

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

LOL. When I was prego with the trip lets, I was in the hospital for pre-term labor for a week at 25 weeks which as you know was complete hell (well, you might not know about the being pregnant part ). Luckily, I was in a study and had a wonderful nurse advocating for me and she talked the docs into letting me go home on complete bedrest. I made it another month at home.....I would have gone completely nuts if they made me stay in the hospital that whole time.

I am so glad you have a new outlook, Mikie. I think it will help you and Jim a lot more than you realize.Hope you are both doing well!Snow

Mikie, I would just try to assure Jim that there will be pain with what's going on, but it will pass. Which, of course, doesn't always help when someone's in the midst of pain. I'm glad his mentality is still going upward.

Yes, short-term goals definitely. I do that myself, and I'm not ill. Yesterday's history, tomorrow's a mystery and all that. Continued luck to you guys!

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Well, I almost got to report that this was a GREAT day; but things didn't work out, so it's just a GOOD day instead.

When I called Jim this morning, I got the great news that he was going to be released from the hospital! However, after the physical therapist walked him down the long hall and had him take a few stairs, it was all just a bit too much for him. Luckily he didn't throw up in the stairwell like he thought he might do; but instead of walking back, Jim got a free wheelchair ride. That little incident (plus another onslaught of that pain he's been having lately) put the brakes on going home today, so that they could work with him a little bit more before making the big escape perhaps tomorrow. The occupational therapist came by and had Jim sitting up for while. She gave him several nifty gadgets and showed him how to use them to aide himself when he gets home. I watched while he got his socks on and off and, for the first time in over two weeks, pulled on some pants.

Back home, just in case the hospital doesn't come through, I borrowed a potty-chair and a walker to help once Jim is home. I vacuumed, shampooed the carpets and rearranged the furniture to turn the living room (with the king-size fold-out sofa bed) into our temporary living/sleeping quarters while Jim recuperates. (I well remember that it took me a month of recovering just from pneumonia to finally go back up the stairs to my own bedroom at my old house). If need be, I've made arrangements with some friends to help rearrange the spare room downstairs (by the bathroom) from our card-playing room back into a bedroom, in a week or two after we see how things are going. I also put a call into the onocologist to schedule an appt., and called the ASO to see what we need to do to get Jim's HIV meds until he gets approved for a medical card.

Whew! I'm tired from handling all that stuff; but I did have that nervous energy (from hoping to bring him home today) to work off anyway. All-in-all, I feel much better now about bringing Jim home tomorrow having gotten all that stuff handled. I know Jim needs to stay in the hospital if he's still having enough problems; but I'm really excited about having him back home. I found myself crying again, for the first time in several days, just thinking about how happy I'll be to have him at home. (gosh! I'm just a mess, aren't I? LOL) Now Jim just needs to decide what he wants for dinner his first night back in case I need to make a run to the grocery store.

hoping that 24 (days) is the magic number,mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

all thoughts, prayers, vibes, and pagan chants are always welcome if for no other reason than they help with my peace of mind.

Regardless of whether Jim gets released from the hospital 2morrow or 3 days for now, we have a hard road in front of us - getting medical coverage assistance, keeping up the bills without Jim's income, getting new prescriptions - not to mention chemotheraphy for months to fight the cancer. But I've been in this struggle before (with Randy, with myself, and even with 2 of my spaniels that had to have cancer surgery) and had a fair amount of success (I'm still here 9 yrs after the last bout of pnuemonia, and each dog survived for another 3 yrs) so I still have some hope to win this battle too.

Just knowing that so many people are keeping us in their thoughts gives me the encouragement to keep up the fight.

sometimes the healing process is not as fast as we hope it would be. But, every day it sounds like there's good progress.

ah, as it was at the beginning of this crisis, the "waiting" is always the hardest part.

as much as i want him home, I can only do "so" much for him at home (no IV pain killer here ). if he's still "that" sick, then he's still where he needs to be. The last thing I want to do is bring him home to turn around and rush him back to the hospital. I've got things handled as much as possible, most appts are still a week away, and I've got all those games and things my family sent for my birthday back on the 14th (what a wonderful gift that has been! I must remember to do that for the next person I know in the hospital )

What was it I said earlier in this thread? That it takes patience too.

the snow has melted, the ground is muddy, so the cockers are bringing in quite a few dirty paw prints (3 dogs x 4 legs starts to add up to alot of paw prints! LOL). Plus ever since my bouts of pneumonia, I've had that germ-phobia thingy going on. A clean house doesn't make you sick. Speaking of which, I should go spray some more Lysol around, just in case. ROFL

Hugs to you all!! mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

[img]Honey you are far from being a mess! You sound just like my mother when we came home from the hospital for any reason! Clean the house change the beds shampoo the carpets etc... You are a wonder life partner. Is that not what is is all about. You & your partner are in my thoughts a prayers.

The house is still clean today; but the dishes were starting to pile back up. You'd think there was a family of five living here with all the cups in the sink. LOL But that's one of my "few" faults - I get a clean glass each time. Another fault is that I drink over 2-liters of Coke a day. But that bad habit turned out to help make two great Summer pool parties. So I won't be giving up either of those bad habits anytime soon.

Pooltag is a crazy pool party (started on Jim's 50th bday) based off Redbull's Flutag. Our friends and us build themed "rafts" from 2-liter bottles and duct tape, add some music and costumes, and the object is to sail across the pool. Hilarity ensues! Read all about it at http://reigningpages.com/pooltag

---------------But back to the present when holding Pooltag3 is still debatable.

Today was another good day! Jim and the doctors decided this morning to wait until Fri to try for a release again. So today, the therapists have been in hard-and-heavy. Although I can tell that he's frustrated, tired, and in pain, my Jim has been putting up a pretty brave face and doing all the exercising. I can hear the change in his voice as he talks about how he will do the activities so he can go home 2morrow.

Making my inner Pisces happy LOL, I ended up in the hallway and the elevator with the physical therapist. Jim hadn't been too nice to her over the past few days. I apologized and told her I could understand how tough her job must be. I made sure that she understood how much "I" appreciated her work with Jim. (I just haven't had the time to bake up more muffins; but I'm going to have to make sure she gets some of them too. )

I finally got a call back from the oncologist scheduling a temporary appt. for 2morrow at 1:45. I explained that we weren't certain Jim would be released in time, and may have to reschedule for the first of the week. I am concerned that Jim won't feel up to an appt that soon anyway; though when I called him, he said he felt much better and believed he could manage the trip to the doctor. I'll think we'll see how things go first 2morrow - a couple more days of recovery over the weekend would probably be more beneficial first. (that'll also give me more time to figure out how we're going for pay for the doc visit )

I'm still eating and sleeping enough (though it sure doesn't feel it!). I'm back to 95% adherent to my meds; but was frustrated to puke today because of them. Sigh. But at least I waited long enough to get sick that the meds stayed down. Oh wait! I'm supposed to have changed my attitude, so just ignore that last gripe. LOL Of course, I'm still freaking, in the back of my head, about what the heck is going to be happening through the next few days and up to Pooltag this summer; but at least I'll be better prepared for whatever does come about.

mikie(who was a good Boy Scout, and still tries to "be prepared")

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Mikie have you tried a bit of med weed for all that puking? Its very effective.

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Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."MtD

I'm trying not to be too upset; but today sure didn't go the way we had hoped. It was definitely an emotional rollercoaster day. Just think, Jim and I love going to ride the coasters each summer; but I swear this is one ride I wish I could get off of.

Of course, my cell phone has been with my constantly through this crisis "just in case"; and my alarm was set for 8:30 as it has been for the last few weeks, so I can struggle to get myself together and get to the hospital by 10:00.

This morning my phone woke me up an hour early. But it was NOT the call I have been dreading to receive; instead it was Jim, sounding better than he has in three weeks, asking me to come in earlier this morning, as his release was scheduled for 10am. WOOHOO!

However, by 830, Jim had called back telling me to not get excited. BooHoo Some of his blood work still was low and they decided he shouldn't go home yet. ARGH! Since I was up and dressed, I headed on to the hospital. When I got there I found out that not only were his white blood cells very, very low, but his hemoglobin was dangerously low - so low that the doctors were worried about heart failure! So the doctors decided on another blood transfusion. With a lot of patients on the floor right now (and all very sick), and with Jim's port being clogged, it wasn't until late afternoon that they finally starting pumping the fresh blood into him.

Jim's roommate, an 86 yr old man with colon cancer who has been in the hospital about 5 more days than Jim, was having a bad day too, and was also getting blood. So there was a lot of activity going on in their room today - which is always a little un-nerving.

Because Jim is now at high risk of acquiring other germs, he's been moved back to a private room again. I thought that was cool - he'll be able to sleep better, and across from the nurses station they'll be able to keep a better eye on him; but Jim was under the impression that he was being moved into "solitary" to die. I had to have a serious heart-to-heart and explain that although things are quite dire right now, death is not that imminent. (Well, it still really is; but none of us can think that way or we'll never win this battle)

I should also mention that he's built up a tolerance to the pain med (dilaudid) and the 4 mg is now having no effect.

I spent nearly the whole day at the hospital with Jim going through the ups and downs. At dinner, I took a couple of hrs. to run home and feed myself and the doggies. When I returned, he was doing better physically and mentally, and was actually ready to just get some sleep. Back at home again, I have a chore to do (besides posting all my updates about today). I dragged the blankets and pillows down this morning for the fold out bed when I thought he was coming home. now I've got to lug it all back upstairs so I can sleep in my own bed. LOL

Up and down, up and down, down and up. Whee! What a horrible rollercoaster ride. I really want to get off now.

shhh, don't tell anyone but my Ohio mom is my dealer. Without the weed, I probably would have passed away yrs. ago with wasting syndrome, or maybe from puking so much through the years. LOL Believe it or not, I really don't get high too much, but a toke or two in the morning (and a few more throughout the day) usually is enough to make me NOT feel sick most days. Some of the other days, nothing helps. My doctor and I discussed this whole problem (back on the 13th during this crisis), and we decided that I'm just "stuck" puking 4-6 times a month. I guess that's the price I have to pay to have good numbers. It sure as hell beats puking EVERY day, as many many regimens made me do throughout the years. What's the Brokeback Mountain quote? "If you can't fix it, then you've got to stand it."

Mikie, don't even think about the 'next few days.' It's one day baby, just one day.

I'm trying Betty; but it's so very hard. During this crisis, I've HAD to consider what happens next so I don't end up on the streets. Hopefully, when this immediate crisis ends, I can worry about things just day to day for a while as Jim comes to grips with being positive and starts to fight the cancer. Right now I have to worry about everything.

mikie(who won't be watching BBM for a while cause he's already been crying enough )

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Jim's roommate, an 86 yr old man with colon cancer who has been in the hospital about 5 more days than Jim, was having a bad day too, and was also getting blood. So there was a lot of activity going on in their room today - which is always a little un-nerving.

We all know hospitals are just ALL unnerving -- they tell you you can leave and then want just one more test, they change their minds a dozen times about how you are doing. Jim is SO lucky to have you there with him to give him perpsective and love. I hope you can take care of yourself and stay strong through this.

Mikie, I'm so sorry to hear of this latest setback. And just when things started going so good! Just try to do what's at hand and not get too overly-involved emotionally, if you know what I mean. I'm sending love you guys' way today.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Please forgive me for not seeing this thread until now. I haven't been posting too much lately.

I am so terribly sorry for the roller-coaster ride that the month of March has given you. I just read this entire thread and have thought back to when my husband was going through the same thing.

You are a trooper. You have shown unbelievable strength during this entire ordeal. I am only hoping that the two of you can be home together soon, hugging your dogs and making rafts out of 2-liter bottles.

You are both in my thoughts. BIG prayers are going your way, BIG prayers.

~ Cindy

P.S. - Loved the pic in the newspaper! I would let it go to my head if I were you, lol!

shhh, don't tell anyone but my Ohio mom is my dealer. Without the weed, I probably would have passed away yrs. ago with wasting syndrome, or maybe from puking so much through the years. LOL Believe it or not, I really don't get high too much, but a toke or two in the morning (and a few more throughout the day) usually is enough to make me NOT feel sick most days

Mikie, this is what is so fantastic about med weed. Its potent stuff that allows med users to smoke a lot all day if need be with out getting high. You need to be able to function. So being too high all the time would not help and perhaps you would not want to smoke because of that.

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Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."MtD

mikie(who won't be watching BBM for a while cause he's already been crying enough )

Wouldn't you know it? Just before Jim was hospitalized, we switched from TimeWarner to the new ATT Uverse. I am now dvr-ing Pinky and the Brain, Voyager, and, since we have the LOGO network now (woohoo! gay TV), Queer as Folk. I finally caught up and each nite at 11 head to bed, to watch QAF and then zonk out at midnight. Last nite's episode? Ben hospitalized with pancreatitis and Michael (there are way too many "Michaels" in the world LOL) crying in the hospital hallway. Hmph! and I always thought TV was my friend. LOL

oh, I wouldn't go so far to say that. ROFL If I didn't get high sometimes for the fun of it, I'm sure I would have to be taking some presciption of some sort to cope with the crap that I've gone through. Thank goodness for my friends, and my blog, or I be seeing a therapist; thank goodness for the caffeine and nicotine that have gotten me through every day, and especially the bad days; thank goodness for the pot or I'd hardly ever eat, puke more than I do, and never get a moment of peace in my crazy head. LOL

And thank goodness for all the support from the people here. A step in the routine each time I come home (after letting the dogs out first and getting some Coke of course LOL) is to come check this thread. As I've said before, your support has been invaluable to me. Each day as events go by, I keep up my hope that, each night when I write my update, I'll be able to tell you kind people some good news. (As you can see, I've been trying to keep my sense of humor through this, as much as I can) It pains me to even bother you with my troubles (cause we've all got troubles, don't we?); but I appreciate that so many people have followed along for this very long month, and have sent out their good vibes to us. Your encouragement supports me to encourage Jim. Having been down this road before I know that it does take positive thinking to overcome a situation like this, if it can be overcome.

Today we were just riding along a straight part of the rollercoaster. The transfusion and injections of [insert some sort of medicinal name here] seemed to be helping, as Jim's numbers are slowly beginning to climb back up. The nurse explained to us that this situation is known as the "nadir". Seven to 15 days after chemo, you reach this low spot when the chemo has not only done a number on the cancer; but also on your blood!

Hopefully when Monday rolls around, and after 28 days in the hospital, Jim might be able to come home. Looking forward to that I've decided to go ahead and rearrange in the downstairs rooms to set up Jim's old bed. I explained how it wasn't to shut him off; but to have a quiet place, away from the spaniels, that he can use to recover in and then nap in, when he's not feeling good from the chemo in the next few months. He explained how he wasn't happy at all that I'm making all sorts of decisions like that; but that he also understood that I was taking care of him and he would have to put up with most things being out of his control for a while. (As a LEO, not having control is the worst thing in the world. LOL) Poor Jim keeps asking what "he" can do to make things get better; but like trying to raise your tcells, it's something that just happens or doesn't. There's not much to do except hope the meds do the trick.

By the way, the older gentleman back in Jim's old room still isn't doing too well either. His wife and I compared notes and situations for a while in the hallway, while they did a portable x-ray on him and Jim and the therapist walked partway down the hall and back. Unfortunately, that image, of Jim tottering in the hallway pushing a walker, sent me back into yet another hospital bathroom crying.

mikie

« Last Edit: March 29, 2008, 10:14:24 PM by leatherman »

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Oh Mikie, it must be painful seeing Jim in that situation. But, every step he takes is a step towards his recovery. Just take care of yourself. If you need to smoke, smoke. You're doing the best you can and you guys have my love.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

This MorningBeing a Sunday, they weren't about to release Jim today. LOL His blood counts, while still climbing slowly, still aren't good enough for him to be sent home yet anyway. When Jim isn't feeling any pain, or not in la-la land, he seems to be doing okay. Today, he AND I took a stroll down the hall and back. He was a little wobbly a few times; but got a kick outta waving to the older couple back in the old room.

The doctors said (once again) that perhaps he might get out tomorrow. I think I'll wait until hearing about the blood results in the morning before I get too excited this time.

This AfternoonWe didn't get to set up a bed last night; so I was hoping to get that done this evening. Too keyed-up to rest, I starting cleaning up the two rooms and getting the bed parts together. I sure wish I had brought the single bed over from my old house; but as it hadn't been used in 7 yrs, and we really had no place for it over here at Jim's house, I left it behind. Silly me for thinking that any of this might be easy. LOL As I started getting bed pieces together I realized I have a king frame with no slats or box springs, and a single frame with a base but no mattress. I called nearly everyone I know; but no one has an extra single mattress, so the bed plans are on hold until I figure out what to do.

This EveningI must say too that I was actually a little leery about bringing Jim home tomorrow (and I think he's worried about the prospect too). My fears proved true tonight. When I went back early this evening, Jim was in a lot of pain and he had also been running a temp (100-101) for nearly the last 18 hrs. Only an hr after the last pain meds (dilaudid), he was curled up in the fetal position, crying because he was hurting so badly. Because they hadn't given him a full dose of meds, they were able to hit him with a little more, and that seemed to help. Although it pushed him back into la-la land where it took me an hour to convince him that he hadn't eaten dinner, and to get him to finally eat some (a bowl of frosted flakes). I still didn't think he was doing so well after another half hr. When the nurse came to take vitals after the pain meds, I knew something was up. Since we're right outside the nurses station, I found out that several patients, including Jim, weren't doing very well and a few more nurses were being called in to assist. Within 15 minutes, a nurse was assigned to Jim and retaking his pulse/ox. Within another 10 mins, they hooked Jim up to the O2 and called his doctor about this turn of events. I stayed another hr, until he finally started to drift to sleep, before leaving.

Needless to say, I needed some comfort myself by this point. Stopping by my Ohio mom's, I got fresh onion rings, and a shoulder to cry on. I try to confine my crying to my house when it's just me and the dogs or in hospital bathrooms (LOL); but today was just too much. I know saying this will make you all worried; but after all these weeks, I'm really at my wit's end. I'm sure after some sleep, I'll be able to "butch it up" again tomorrow and muddle through; but tonight I think I'm losing my hope.

Moms are practical people though, so after some crying, I also got a solution to the bed problem - an air mattress! So 2morrow, I need to stop by Wal-Mart again. I had to buy an electric shaver the other day. Jim's blood counts are too low to allow him to use a razor and possibly get cut. I've still got a little cash on me, and my money will be coming in this week; but, on top of everything else, I foresee bad financial woes in the near future.

I have realized that in two ways this IS all different from what happened with Randy. First, Jim is not Randy. Oh Randy was moody too; but Jim is a much moodier guy, so he has a different attitude towards being sick than Randy did. I catch myself running interference with nurses, lest they think he's the hateful guy that he sounds like sometimes. And two, with Randy, I knew where things were going, and really had found some peace in it all; but this is much different. Really, either outcome is still very probable. It seems for every two steps forward, he takes two back - and that's getting him nowhere fast.

I've been thinking back to my little 3-legged cocker spaniel (Gabby) that I had to put to sleep back in December. I know I didn't do her wrong; but because of Jim, I didn't stick by my principles; otherwise I would have put her to sleep a week before, so she didn't have any pain at all. I know I can't, nor am I suggesting that we "pull the plug" on Jim; but I sure hope I'm not putting him through all this misery, if he won't survive much longer. Ah! There's the deja vu again, as I appeal to a Higher Power to help me know what to do to make the right decisions.

mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Mikie, damn it, damn it to hell. I am really sorry about these latest woes. You know I've been following all this since it started. I'm still sending love your way. I'm hoping for strength for you to get through this the best you can. Just hang in there, baby. Tomorrow's another day.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

... It pains me to even bother you with my troubles (cause we've all got troubles, don't we?); but I appreciate that so many people have followed along for this very long month, and have sent out their good vibes to us. Your encouragement supports me to encourage Jim. Having been down this road before I know that it does take positive thinking to overcome a situation like this, if it can be overcome.

Mikie, please know that you are not bothering us. You are in a place where many of us have been or will be at some point in the future. We just want to support you and Jim.

Rather than "torture" you again with a big long post, suffice it to say, that today wasn't too bad. Jim's condition did continue to improve and all the docs are in agreement that it looks like Jim will be released tomorrow. I know I heard that before, but each time, we're closer to it really happening.

The part I won't bore you with was how we had another little "tiff" this evening. (I don't "argue" with my partners. I did that enough with my father and don't accept it in my life as an adult.) I read back through your previous replies when we had another brief "tiff" and your thoughts encouraged me again. Although Jim has been acting out-of-character quite a bit over the last three days (between the meds, the pain, the worries and sleep deprivation, is it any wonder?), he did show his true self, and called me late tonight to apologize for being upset with me. So you'll know, I didn't bottle up all my feelings; I chatted with a couple of my moms who, though they couldn't solve my problem, were definitely supportive.

Well, with a little luck, just maybe I'll get Jim out of the hospital before we hit the thirty day mark (tomorrow at 1pm officially ends day # 29). Keep thinking those happy thoughts and sending out those prayers for us.

mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

wow, this is one ordeal that you and your partner are going through. ive been reading this thread daily and want to send my condolences out to you and jim. thank you for sharing such personal matters. i hope this turns out the best for you. you and jim are in my thoughts and prayers.

Most days I've come home and written up the happenings from the morning. Unfortunately, while many of Jim's mornings haven't been too bad, the afternoons (and sometimes the nights) have been problematic. Any of the good tales I've had from my first trip of the day to the hospital have been overwhelmed by the setbacks during my second visit of the day.

Through the events of yesterday afternoon and into this morning, I was actually very, very concerned that things were not going the right direction. Although the doctors have been assuring me that Jim's counts have all been getting better, I've actually been seeing that he's been steadily getting weaker and having more problems.

My biggest concern over the last three days or so has been that Jim seems to be, for want of a better word, "unconscious" most of the time. When it's not from lack of sleep, tiredness, and feeling ill, it's from the pain meds. When he "comes to", it's for very, very short periods of time. For example, he zonks out while changing TV channels. Two days ago when he left it on the "catholic channel" (well, he is in a Catholic hospital LOL) for over an hr, I quit trying to watch any TV when I visit, and just read my book now (7th Heaven by James Patterson). It took over 45 mins to try to prompt him to order lunch today (he hadn't eaten any breakfast), and I finally gave up trying. When he is conscious, he is quite crabby. I explained that I understand he thought I was "pestering" him about ordering lunch; but he had been holding the phone, off the hook, in his hand for 15 mins without ordering.

I debated this evening (after talking with the moms) on two courses of action now. One I implemented tonight (talking with Jim) and the other I'd rather not do for my own selfish reason (spend a night and day in the hospital to actually speak with ALL the doctors).

When I returned this evening, Jim was actually much better! The oncologist was there and Jim was awake and alert. After the doctor left, I put plan one into action. I explained to Jim how worried I was about his states of "unconsciousness" and his out-of-character crabbiness. I told him that he needs to quit taking the Dilaudid and take the vicoden; he's got to sit in the chair more, especially for his meals; and he's got to try to stay awake more. He has got to try to fight through this, no matter how hard it is.

After our talk, things continued to go well. Jim sat up in a chair for nearly an hour. He ate dinner and actually talked with me for a while. We watched some TV together (though he missed half of Idol, as they took him for an ultrasound to check for blood clots in his legs - and there aren't any!) Jim stayed awake for the 4 hrs I visited making me feel much better than I did earlier in the day. Before I left he told me that he would ask for a sleeping pill rather the pain med before he tries to get some sleep tonight.

Though the past 24 hours had me very concerned and upset (you would have freaked if I had really posted what I was thinking and feeling last night and this morning. Then after dousing my hands in the antiseptic, I rubbed my red, teary eyes yesterday and now one of my eyelids is slightly swollen and hurts), I feel much better after talking to Jim and then seeing him try so hard for me tonight.

I'm still a little leery about bringing him home as I don't think I can care for him properly if he's going to be so unconscious so much of the time; but several of the doctors reassured me this evening that they though he would recover better (both physically AND mentally) if they got him out of the hospital and back into his own home.

After a week of attempts to release Jim, maybe, just maybe, we'll get him out before Day #30 ends at 1pm.

Keep those legs crossed for us another day Betty!

Thank you all for all of your continued support through this truly horrible month!

mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I'm glad to see that tonite went better than usual. I have no doubt that once Jim is home ( hopefully tomorrow!!) you'll rise to the occasion and be the best damn nurse he could ask for! Did you get the air mattress?

Mikie, my legs are crossed as I'm typing this. I hope Jim can continue to fight and not give into the temptation of taking the D's. You guys have been and will continue to be in my thoughts.... Luv,Betty

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I understand your concern about Jim coming home early. If he does, he would have home care or something, right? I think home would probably do him a world of good to, you know being back with familiar surroundings and all. That constant hospital white can make one crabby for a period of time...

Um, no. That was the subject of our little "tiff" the other night. Jim thinks the sofa bed will be fine. But I think he's over-estimating his recovery, so we'll wait and see. Personally, I'm not above saying "I told you so", when I need to go out in a couple of days and get a mattress. He he he. I guess I do have a little bit of an evil side. But really, as much of my life will be "day-by-day" for a while as we continue through Jim's recovery and chemo treatments, I do have that room and bed nearly ready and can get a friend to sit with Jim, if I need to run out and purchase a mattress.

I understand your concern about Jim coming home early. If he does, he would have home care or something, right?

When I talked to the rep from the ASO last week, she did mention that home care was something they could cover. I think we'll deal with this issue on the day-by-day plan too. I remember when Hospice Care came in for Randy. They were very surprised at how long I had already cared for Randy while he was in such a bad state, so I guess I can be a "damn good nurse" when I have to. (though I was 14 yrs. younger back then LOL)

I'm up early this morning, and hoping this is finally "the day". My right eyelid is just a little more puffy than it was last night. It's not affecting my vision, though it is annoying as heck. It still hurts a little bit so; but I'm trying hard to NOT rub it or mess with it. And no, moms, I don't think it's pink eye or a stye. I think my eye is just "mad" from all the crying and rubbing and that stupid antiseptic I wiped into it. LOL I had a similar thing happen a few months ago; but it only lasted a few days, so I didn't go for any medical treatment. If it gets worse or doesn't get better by thurs, I'll have it checked out while I have someone with Jim when I go to handle his appt. with welfare.

I'm going to let the dogs out while I get Jim settled in and then let them in one at a time, so they don't overwhelm him. I know the dogz are going be soooo happy to see Jim. From personal experience, I would think that some puppy-love will be the best coming-home medicine Jim can get!

I just talked with Jim and after a cat scan within the next half hour (one last check for clots and a current pix of those tumors for the oncologist appt on Fri), he says they are planning to release him. If we can get Jim out by 1pm, we can end this ordeal after 30 days. I can't help it now; but I'm starting to get excited!! Hopefully, I'll be posting some GREAT news for y'all later this afternoon.

mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Here's hoping Jim (and you) have a happy and otherwise uneventful homecoming and that they don't change his release time on you too many times ("just one more blood/lab/urine/ . . .test . . .") It can be quite an emotional roller coaster trying to get out of the hospital.

Hope everything goes well for y'all today honey. Coming home from the hospital were some very happy days for me....sure he's got a long road ahead, but everything is better at home. You can't really rest in the hospital.

I'm keeping you both in my prayers, and looking forward to a good report from you later on.

hugs,Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

I was up early this morning, and hoping this would finally be "the day".

My right eyelid is just a little more puffy than it was last night. It's not affecting my vision, though it is annoying as heck. It still hurts a little bit so; but I'm trying hard to NOT rub it or mess with it. And no, moms, I don't think it's pink eye or a sty. I think my eye is just "mad" from all the crying and rubbing and that stupid antiseptic I wiped into it. LOL I had a similar thing happen a few months ago; but it only lasted a few days, so I didn't go for any medical treatment. If it gets worse or doesn't get better within a day or two, I'll have it checked out. (more about my eye in a moment )

I talked with Jim before heading to the hospital and learned that after a cat scan within the next half hour (one last check for clots and a current pix of those tumors for the oncologist appt on Fri), they were planning to release him. I arrived a few minutes after they had taken Jim for the cat scan. I was hoping that after that was done, we'd wait a couple hrs to hear the results and then get the heck outta there.

While I was waiting, who should be at the nursing station, but my ID doc again. LOL (I think I've overheard that someone else on the oncology floor a few doors down has HIV too) The first words out of his mouth were what did I do to my eye. I explained how I think I got antiseptic in it, and got a "free" consult from my doc as he took a look at it. He agrees that it just looks irritated and to apply some cold compresses (which I've already been doing I'm typing this now with a compress over that eye, so you all look very far away. ROFL). He also told me that if it got worse to go to StatCare and make sure to call and let him know. Check out the lovely picture I attached to see how it looked this afternoon.

My doc then told me that he had seen an xray that was done of Jim's chest a day ago and there was a little bit of fluid around his lungs. He didn't think it looked like too much of a problem (the ct scan would tell them more) and that the odds of a release seemed a good 95% today.

When Jim was brought back to the room, we watched TV for a while before his lunch arrived. After lunch, Jim started getting groggy again. He was fumbling to hit the call button (for the nurse) and I asked him what he needed. He said he wanted to get the pain med so he could go to sleep for a while. I told him that 1) he should try to stay awake so he'd be ready when they released him and 2) that if he took the D-shot, they would NOT let him out today for sure.

Jim was a good boy for me and, when the nurse arrived, he asked about the vicoden instead. When he asked about his release, the nurse informed us that the pulmonary doc said "no go" for today while they monitor this fluid problem. Needless to say, upon hearing that, Jim opted for the shot.

I'm still worried about Jim's attitude; but it's still my "job" to help him "try", especially since he's incapacitated right now. Unlike two of moms, who's husbands don't do anything to try to improve their health problems, it's not quite time for me to give up and let Jim "do what he wants".

So I spent the afternoon trying to arrange things so "if" Jim is released tomorrow in time, someone can be with him so I can try to make tomorrow's welfare appt. at 230. Luckily, if that doesn't work out, I've already got things arranged (since we have ended up with same case worker) to handle both of our cases at MY appt date on the 17th. That's just another bother through this crisis, as I have to keep re-scheduling all these appts. I'm not even going to call the cancer doc's office until Jim is actually back at home, since it seems all my worrying and planning is for naught. Ah, the logic of not pre-planning and just taking it one day at a time. (I'll learn that lesson eventually, Betty LOL)

When I got back home this afternoon, I found a note on our door. Thanks to google (what would I do without that and wikipedia??), I found out the letter was from the local Infectious Disease Health Team ("responsible for the follow up of certain Class A reportable diseases within a several county area" according to their website.) I guess that means Jim is about to add one more to the number of AIDS cases in the Ohio count. However, they don't need to "notify persons who have been identified as a contact to an infected individual" as, thank you; but I already know. LOL

Although I do understand that Jim is in the right place if he's still having problems (rather than at home where I would be freaking out trying to handle the problems), I have to say how crestfallen I am that I didn't get to bring him home yet. They've been "teasing" us with the release for a week now, so I'm not setting my alarm early for tomorrow, as I have the last few days. If they do decide to let Jim out early tomorrow, they can just wait around on me for a change. LOL

well, it's nearly 6pm, and the local mom has invited me over for dinner (pizza, I think). I talked to Jim about half an hour ago, and he was awake and doing ok. He had ordered dinner, and was watching TV. I think I'll going ahead and post this now and hope that'll prevent anything else "bad" from happening. (leatherman has spoken, so let it be ROFL) Hopefully, I won't have any more to update you on until tomorrow - with whatever that news might be

leatherman

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

well it hasn't puffed up any further, so that's a good thing. It's only annoying because it's like I'm looking at the world half asleep, but I'm wide awake. It aches a little, rather than hurts. As long as I don't touch it, it's fine.

like the old joke-patient: doctor, it hurts when I do thisdoctor: then don't do that

no new changes to report this evening. Because of dinner, I got to the hospital later than usual, and it wasn't long till it was time for meds (kaletra for one), and a sleeping pill rather than pain meds. Since it was lights out for Jim, I missed Dolly Parton on Idol and got home in time to see who was kicked off.

It was nice having dinner with the local mom and a couple of friends. They weren't nurses, or doctors, or patients, or visitors, or any of the other "hospital people" I've been seeing lately. For a couple of hrs, I felt like a "regular person" again. Very nice!

Well, I'm off to sleep in my big ol' king-sized waterbed alone again (and leatherman hates to sleep alone) where I'll tell the doggies once more than just maybe we'll have Daddy Jim back home tomorrow.

hugs to you all!mikie

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

Sorry, but I thought a little swipe might bring a giggle here. Mikie, keep trucking. Jeez...talk about a month from HELL. I think I lost count by day - or maybe not. Tomorrow will be 31 days, right? Wow.

that's ok. i was giggling along too about Betty's crossed legs. But since Betty and I have made up from a tiff we had a while ago, I wasn't going to pick on her too much. Heaven knows, I can't afford to lose any support or friends right now. (Thanks for doing it for me. love ya Betty! )

They say laughter is the best medicine; but poor Jim and I haven't had much to laugh about this last month. I've tried to leave Jim's TV on the comedy channel a couple of times, hoping that might help a bit; but he really hasn't been able to "focus" long enough. When things are this desperate, anything that might help is worth a try.

Technically this is already day 31. At 1pm, we move into day 32 and start a second month in the hospital. Good grief. After being "teased" for a week about bringing Jim home, I sure hope he's not still there until day 62.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix